Development and Validation of a Questionnaire to Measure Patient's Experiences of Health Care in Pulmonary Arterial Hypertension Outpatient Clinics.

BACKGROUND: Measuring the patients' experience of care at an outpatient clinic can provide feedback about the quality of health care and if needed, can be support for quality improvements. To date, there is no patient reported experience measurement (PREM) developed targeting patients at the pulmonary arterial hypertension (PAH) outpatient clinics. Therefore, the aim was to develop and evaluate the psychometric properties of a PREM scale to be used for patients at PAH-outpatient clinics. METHODS: The development and psychometric evaluation of the PREM for patients at PAH outpatient clinics followed two stages: (I) development of the PAH Clinic PREM (PAHC-PREM) scale based on interviews with patients; and (II) psychometric evaluation of the PAHC-PREM scale including data quality, factor structure (construct validity), criterion validity and internal consistency. RESULTS: A sample of 156 patients at PAH outpatient clinics completed the PAHC-PREM scale (median age 69 years, 57% women). Unidimensionality of the PAHC-PREM scale was supported by parallel analysis. A single factor explained 67% of the variance. Inter-item and item-total correlations were satisfactory (0.46-0.88 and 0.64-0.91, respectively). Internal consistency reliability with ordinal coefficient alpha was good (0.93). CONCLUSIONS: The PAHC-PREM scale was demonstrated to have good psychometric properties and is now ready to be used to measure quality of health care experience from patients at PAH-outpatient clinics.

Health-related quality of life, treatment adherence and psychosocial support in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.

Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) share similar quality of life impairment. The aim of the present study was to investigate health-related quality of life (HRQoL) and its relation to the perception of treatment and psychosocial support among PAH and CTEPH patients. All adult PAH or CTEPH patients in the Swedish Pulmonary Arterial Hypertension Register were invited to participate in a national cohort survey. The survey included the EuroQol 5-dimensions (EQ-5D) instrument that measures an individual's HRQoL; the Beliefs about Medicines Questionnaire-Specific Scale that assesses the perception of PAH-specific treatment; the Mastery scale that evaluates the feeling of control and ability to cope with the disease; and the Social Network and Support Scale that maps the social support network. Of the 440 invited patients, 74% responded. Mean age was 66 ± 14 years, 58% were female and 69% diagnosed with PAH. Patients with PAH were younger, more often female and had a lower EQ-5D index (0.67 ± 0.29 vs. 0.73 ± 0.25, p = 0.050) than patients with CTEPH. Patients with a low EQ-5D index had more concerns about treatment ( p = 0.004), lower coping ability ( p < 0.001), less emotional support ( p = 0.003) and less accessible social network ( p = 0.002). In conclusion, patients with an impaired HRQoL also reported negative effects on their social support network, ability to handle stressors and concerns about treatment.

Psychosocial aspects before and up to 2 years after heart or lung transplantation: Experience of patients and their next of kin.

BACKGROUND: Psychosocial factors are important for patients undergoing heart (HTx) or lung (LTx) transplantation and for their next of kin (NoK). AIM: To describe health-related quality of life (HRQoL; patients only), anxiety, depression, stress, coping ability, and burden (NoK only) for patients and their NoK before and up to 2 years after HTx or LTx. DESIGN: Adult patients (28 hearts and 26 lungs) and their appointed NoK were surveyed with questionnaires about specific psychosocial topics when they were accepted for the transplantation waiting list and 6 months, 1 year, and 2 years after transplantation. FINDINGS: Patients' coping ability and self-perceived health were low at baseline and improved over time after transplantation. However, lung patients took longer time to recover in terms of HRQoL, depression, and stress than heart patients. Similarly, NoK of lung patients experienced a higher burden and more stress 1 year after transplantation than NoK of heart patients. CONCLUSIONS: Healthcare professionals should be aware of the psychosocial challenges patients and their NoK face in daily living and provide support both before and after heart or lung transplantation.

Support Experienced by Patients Living with Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension.

BACKGROUND: As pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are debilitating and fatal diseases it is essential to increase the understanding of patients' experience of support. The aim was to describe patients' experiences of support while living with PAH or CTEPH. METHODS: Seventeen patients (13 women and four men) aged 28-73 years were strategically selected from a regional PAH centre and individually interviewed. The answers were analysed using qualitative content analysis. RESULTS: Three categories that describe patients' experiences of support emerged: Support linked to the healthcare; support linked to the private sphere; and support linked to persons outside the private sphere. CONCLUSION: Healthcare practitioners must work more in collaboration to detect patients' need for support and to develop the patient's own skills to manage daily life. The PAH teams should tailor interventions to provide emotional, informational and instrumental support and guidance to patients and their families.

Quality of life measurements as an indicator for timing of support after oesophagectomy for cancer: a prospective study.

BACKGROUND: Oesophagectomy is a major procedure with known side effects and reduced postoperative quality of life (QOL). It has been shown that support of patients in their new life situation is often lacking. Knowledge about how QOL changes over time is fundamental for addressing patient needs and for determining the optimal timing of supportive care. The aim of this study was to identify QOL changes over time as well as factors that may impact patient QOL during the first year after oesophagectomy for cancer. METHODS: Patients operated on for adenocarcinoma or squamous cell cancer of the oesophagus were included in this study. Seventy-nine patients completed the European Organisation for Research and Treatment of Cancer QOL questionnaires (QLQ-C30 and QLQ-OES18) before and 2, 4, 6, 9, and 12 months after surgery. A general linear model with repeated measurement analysis of variance was used for statistical testing. RESULTS: There was a significant QOL nadir at 2 months compared to 12 months after surgery (QLQ-C30 function scales p < 0.001, symptom scales p < 0.001, QLQ-OES18 scales p < 0.001). Treatment with proton-pump inhibitors was associated with enhanced QOL according to QLQ-C30 symptom scales (p = 0.003) and OES-18 scales (p = 0.015), but age, gender and American Society of Anaesthesiologists classification did not significantly impact QOL. CONCLUSIONS: Patient QOL is severely hampered the first year after oesophagectomy for cancer, with a nadir at 2 months after surgery. Treatment with proton-pump inhibitors improved patient responses to symptom scales. Evidence of severely affected QOL after surgery indicates that these patients need support at an early stage after surgery. These results can be used by healthcare professionals to develop a postoperative supportive-care programme that is timed and better optimised to meet patient needs. TRIAL REGISTRATION: EudraCT database 2009-009997-28.

Sexual knowledge in patients with a myocardial infarction and their partners.

BACKGROUND: Sexual health and sexual activity are important elements of an individual's well-being. For couples, this topic is often affected after a myocardial infarction (MI). It has become increasingly clear that, after an MI, patients are insufficiently educated on how to resume normal sexual activity. However, sufficient data on the general knowledge that patients and partners have about sexual activity and MI are lacking. OBJECTIVE: The aims of this study were to explore and compare patients' and partners' sexual knowledge 1 month after a first MI and 1 year after the event and to compare whether the individual knowledge had changed over time. A second aim was to investigate whether patients and their partners report receiving information about sexual health and sexual activity from healthcare professionals during the first year after the event and how this information was perceived. SUBJECTS AND METHODS: This descriptive, comparative survey study enrolled participants from 13 Swedish hospitals in 2007-2009. A total of 115 patients with a first MI and their partners answered the Sex After MI Knowledge Test questionnaire 1 month after the MI and 1 year after the event. Correct responses generated a maximum score of 75. RESULTS: Only 41% of patients and 31% of partners stated that they had received information on sex and relationships at the 1 year follow-up. The patients scored 51 ± 10 on the Sex After MI Knowledge Test at inclusion into the study, compared with the 52 ± 10 score for the partners. At the 1-year follow-up, the patients' knowledge had significantly increased to a score of 55 ± 7, but the partners' knowledge did not significantly change (53 ± 10). CONCLUSIONS: First MI patients and their partners reported receiving limited information about sexual issues during the cardiac rehabilitation and had limited knowledge about sexual health and sexual activity.

Change in health-related quality of life at early follow-up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.

Symptoms associated with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) impact patient's health-related quality of life (HRQoL). Studies on change and if a minimal clinically important difference (MCID) in HRQoL is reached within a year after diagnosis are lacking. The aim was to investigate the change in HRQoL as well as the proportion of patients that reached MCID at an early postdiagnosis visit. The study included adult patients from the Swedish PAH & CTEPH registry, diagnosed 2008-2021, with Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) at time of diagnosis and a follow-up. Data were analyzed as total population and dichotomized for sex, age (<65 vs. ≥65 years), time of diagnosis (≤2015 vs. >2015) and pulmonary hypertension (PH) subgroups. Data reported as median, interquartile range (IQR), and proportions (%). There were 151 patients (PAH = 119, CTEPH = 32) with an available CAMPHOR score at diagnosis and follow-up. CAMPHOR total sum was 31 (IQR: 21-43) and 25 (14-36); (p < 0.001) at diagnosis and follow-up, respectively. At follow-up, 56% had reached MCID in total sum, while for domains activity, symptoms, and QoL 27%, 33%, and 39% reached MCID, respectively. These results were independent of PH subgroup, diagnosis before or after 2015 and sex. Age below 65 years was related to improvements in activity and worsening of symptoms. In conclusion on a group level, improvements in CAMPHOR total sum as well as all domains were seen in the first year after diagnosis, however, only slightly more than half of the patients reached MCID for CAMPHOR total sum.

Heart or lung transplanted patients' retrospective views on information and support while waiting for transplantation.

AIMS AND OBJECTIVES: To describe the patients' retrospective experiences of the information and support they received while on the heart or lung transplant waiting list. BACKGROUND: Patients differ in the way that they cope with the time spent waiting for a heart or lung transplant. Patients must already before the transplantation be taught about a new lifestyle, risk factors, medication, food restrictions and exercise, so they can take an active role and responsibility for disease management after transplantation. Little is known about patients' experiences of information and support in these situations. DESIGN: Qualitative descriptive design. METHODS: Sixteen patients (16-67 year) were strategically selected from one transplant centre in Sweden and interviewed six months after heart or lung transplantation. Using content analysis, transcribed data were organised into subcategories that reflected emerging categories. RESULTS: Three categories that describe patients' experiences of information and support have been identified: 'Achieving confidence and trust by information and support', 'Experiencing a lack of input and understanding' and 'Struggling with a life-threatening illness and an insecure future'. Each category consists of different subcategories. CONCLUSIONS: Information and support in connection to heart or lung transplantation are a complex and multifaceted issue involving patient-related, family-related, disease-related and treatment-related factors as well as experiences related to the social situation, the healthcare system and society. Transplant patients are very vulnerable, and a deeper understanding of patients' experiences should help healthcare providers in optimising the care for these very sick patients. RELEVANCE TO CLINICAL PRACTICE: A holistic approach to the patient is necessary in meeting the needs of patients with chronic illness, especially patients with children at home, as well as the needs of their families. An important implication is the necessity to enhance awareness about transplant patients in society in general, in particular in other institutions, by sharing knowledge and by improving cooperation.

Primary health care resources for rehabilitation and secondary prevention after myocardial infarction - a questionnaire survey.

BACKGROUND: During the first year after a cardiac event, many patients are offered participation in a cardiac rehabilitation programme, after which the patients are often not given the opportunity to continue to attend rehabilitation and secondary prevention programmes. AIM: This study describes the primary health care centres' (PHCC) resources regarding cardiac rehabilitation/secondary prevention programmes for coronary heart disease (CHD) patients in a southern Swedish region. METHOD: A questionnaire containing 26 dichotomous or multiple choice questions was sent to the responsible manager of all 137 public and private PHCCs in Region Skåne. Questionnaires from 91 (66%) of the PHCCs were completed and returned. RESULT: Few nurses at the PHCCs had special training regarding CHD (10%), cardiac rehabilitation (8%) or heart failure (32%). Twenty-one per cent of the physicians had special training regarding CHD. One third of the PHCCs did not offer long-term secondary prevention programmes, and few (6%) had any routines for offering socio-economic support to CHD patients. Comparison of private and public PHCCs showed that the private centres could not offer a physiotherapist (61 vs. 84%) or dietician (32 vs. 73%; p = 0.03) to the same extension as the public ones. Furthermore, the majority (91%) of PHCCs had no cooperation with patient organizations. CONCLUSIONS: The PHCCs need to improve the strategies and long-term rehabilitation programmes. Furthermore, they need to focus on education programme for the staff. The result revealed that the PHCCs lack resources, strategies and long-term care programmes for CHD patients.

Ambulance nurses' experiences of pain management with Penthrox® in Swedish ambulance care: A mixed method study.

BACKGROUND: Methoxyflurane (MTX) is an inhalation agent that has several potential benefits for limiting various types of pain in ambulance care. AIM: To elucidate how ambulance nurses experience the characteristics of MTX in an ambulance care setting. METHOD: This cross-sectional study applied a mixed-methods approach, using a questionnaire together with complementary interviews. The questionnaire survey was analyzed using descriptive statistics (10-point Likert scale and question index values [Q-IV], range: 0-1.0). The interviews were analyzed using directed content analysis. Study results were reported following the STROBE statement. RESULTS: The ambulance nurses' overall general satisfaction with the MTX concept had a median of 7.0 (IQR 5-8), corresponding to a mean Q-IV of 0.84 (very good experience). The qualitative part was divided into three categories: sense of security, patient participation, and general usefulness. The results revealed varying experiences of usefulness, including pain-relieving effect and the possibility of patient participation. The perceived strong odor of MTX seemed to concern the ambulance nurses and their patients. CONCLUSION: In general, MTX was experienced as a safe and effective analgesic. However, the experiences of the overall usefulness varied, particularly since the product had a perceived strong odor. Increasing knowledge of using MTX, could likely increase the overall usefulness.

Societal costs associated with pulmonary arterial hypertension: A study utilizing linked national registries.

Pulmonary arterial hypertension (PAH) is a progressive disease with no cure. Healthcare resource utilization (HCRU; hospitalization, outpatient visits, and drug utilization) before diagnosis and productivity loss (sick leave and disability pension) before and after PAH diagnosis are not well known. By linking several Swedish national databases, this study have estimated the societal costs in a national PAH cohort (n = 749, diagnosed with PAH in 2008-2019) 5 years before and 5 years after diagnosis and compared to an age, sex, and geographically matched control group (n = 3745, 1:5 match). HCRU and productivity loss were estimated per patient per year. The PAH group had significantly higher HCRU and productivity loss compared to the control group starting already 3 and 5 years before diagnosis, respectively. HCRU peaked the year after diagnosis in the PAH group with hospitalizations (mean ± standard deviation; 2.0 ± 0.1 vs. 0.2 ± 0.0), outpatient visits (5.3 ± 0.3 vs. 0.9 ± 0.1), and days on sick leave (130 ± 10 vs. 13 ± 1) significantly higher compared to controls. Total costs during the entire 10-year period were six times higher for the PAH group than the control group. In the 5 years before diagnosis the higher costs were driven by productivity loss (76%) and hospitalizations (15%), while the 5 years after diagnosis the main cost drivers were drugs (63%), hospitalizations (16%), and productivity loss (16%). In conclusion, PAH was associated with large societal costs due to high HCRU and productivity loss, starting several years before diagnosis. The economic and clinical burden of PAH suggests that strategies for earlier diagnosis and more effective treatments are warranted.

Societal costs associated to chronic thromboembolic pulmonary hypertension: A study utilizing linked national registries.

Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare but serious complication after a pulmonary embolism. Healthcare resource utilization (HCRU; hospitalization, outpatient visits, and drug utilization) as well as productivity loss (sick leave and disability pension) before and after the CTEPH diagnosis is sparsely studied. By linking several Swedish national databases, this study estimated the societal costs in a national CTEPH cohort (n = 369, diagnosed with CTEPH in 2008-2019) 5 years before and 5 years after diagnosis (index date) and compared to an age, sex, and geographically matched control group (n = 1845, 1:5 match). HCRU and productivity loss were estimated per patient per year. Patients were stratified as operated with pulmonary endarterectomy (PEA group) or not operated (non-PEA group). Direct and indirect societal costs were 2.1 times higher before, and 8.1 times higher after the index date for patients with CTEPH compared to the matched control groups. The higher costs were evident already several years preceding the index date. The main cost driver before the index date in both the PEA and the non-PEA groups was productivity loss. The productivity loss remained high for both groups in the 5-year period following the index date, but the main cost drivers were prescribed drugs and hospitalizations for patients that underwent PEA and prescribed drugs in the non-PEA group. In conclusion, CTEPH was associated with large societal costs related to healthcare consumption and productivity loss, both before and after diagnosis.

Positive experience of a mobile radiography service in nursing homes.

BACKGROUND: For elderly people living in nursing homes, a transport to hospital for a radiological examination can lead to increased anxiety, disorientation and other problems related to the new environment. OBJECTIVE: To investigate the usefulness of a mobile radiography service for radiological assessment of patients in nursing homes from the patient and staff perspectives. METHODS: Lightweight equipment with a digital flat-panel detector was used for mobile radiography on nursing home patients in their own rooms. Data on patient and staff experiences from the service were collected using a questionnaire with closed and open-ended questions. Image quality was evaluated by the radiographer and a radiologist. RESULTS: The majority of 241 radiography examinations were of the musculoskeletal system (94%). Twelve of 123 patients had pathology that required hospital treatment, while 22 patients with radiographic pathology could be treated locally. The main beneficial factors were security and comfort, acceptance from the patients, no need for transportation, no need for staff to be absent from the nursing homes. CONCLUSION: Mobile radiography in nursing homes is technically feasible, with good image quality. The most beneficial results were that patients avoided unnecessary transport back and forth to the hospital, and that the majority of patients could be treated locally.

Self-Perceived Competence of Ambulance Nurses in the Care of Patients with Mental Illness: A Questionnaire Survey.

Ambulance nurses in prehospital emergency care must assess, treat, and triage patients with mental health issues. This study aimed to investigate the self-perceived competence of ambulance nurses in prehospital emergency care of patients with mental illness. A cross-sectional questionnaire survey was done, a question-index value (Q-IV; range: 0-1.0) was defined as a summary of the proportion of positive responses (%). Correlations of self-perceived competence with education and professional experience were also examined. Overall self-perceived competence was good (mean Q-IV, 0.80). For six of the nine questions, women rated their abilities slightly lower than men. Women rated themselves as fairly good in providing "information about types of effective help available" (Q-IV, 0.55) and in "suggesting tactics for helping a person with mental illness feel better" (Q-IV, 0.56). Men rated their competence as fairly good in "directing patients to appropriate sources of help" (Q-IV, 0.58). Self-perceived competence did not correlate with education level or professional experience. In conclusion, these results indicate that in encounters with patients who have mental illness, ambulance nurses perceive their overall competencies as good, with some sex-based differences in self-perception for specific knowledge areas. Education level and professional experience did not correlate with self-perceived competence.

Prevalence of potential drug-drug interactions with disease-specific treatments in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: A registry study.

Polypharmacy increases the risk of drug-drug interactions that may disturb treatment effects. The aim of this study was to investigate the frequency of codispensing of potentially interacting or contraindicated drugs related to PH-specific treatment in the Swedish pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) population. All prescribed drugs, on an individual level, dispensed 2016-2017 at pharmacies to patients with PAH or CTEPH were obtained from The National Board of Health and Welfare's pharmaceutical registry. Potential drug-drug interactions were investigated using the Drug Interaction tool in the IBM Micromedex® database. There were 4785 different dispensed drugs from 572 patients (mean age 61 ± 16 years, 61% female, mean number of drugs per patient 8.4 ± 4.2) resulting in 1842 different drug combinations involving a PH-specific treatment. Of these drug combinations, 67 (3.5%) had a potential drug-drug interaction considered clinically relevant and it affected 232 patients (41%). The PH-specific drugs with the highest number of potential drug-drug interactions was bosentan (n = 23, affected patients = 171) while the most commonly codispensed, potentially interacting drug combination was sildenafil/furosemide (119 patients affected). Other common codispensed and potentially interacting drugs were anticoagulants (n = 11, affected patients = 100) and antibiotic treatment (n = 12, affected patients = 26). In conclusion, codispensing of PH-specific therapy and potentially interacting drugs was common, but codispensing of potentially contraindicated drugs was rare.

Experiences of patients with hip fractures after discharge from hospital.

BACKGROUND: To achieve successful rehabilitation after hip fracture and meet patient needs it is important to listen to how individual patients perceive their situation. PURPOSE: The aim of this study was to explore how patients with hip fractures experience the time after hospitalization. METHODS: A qualitative study was performed, data were analyzed using content analysis and included a total of 14 patients who had undergone surgery for a hip fracture. RESULTS: The result comprised two main themes, In the hands of others, and A new unfamiliar life. These included in total nine categories. CONCLUSIONS: Not all patients received adequate pain management or were treated in a professional way by the health system. Interventions targeting an improved care trajectory which include all care providers, the person with the hip fracture and their significant others are needed. Further research is needed to reveal the reasons for uneven/differing care.

Recently accepted for the waiting list for heart or lung transplantation - patients' experiences of information and support.

The aim of the study was to describe the patients' experiences of the information and support they received after being placed on the waiting list for a heart or lung transplant. The design was qualitative, and the critical incident technique was used. Incidents were collected via interviews with 21 patients. A total of 357 important events, both positive and negative, were identified and divided into two main groups: Body and mind and Information and support. The following subgroups emerged: chronic illness affects the patients, attitudes towards the future, impact of information, support from public organizations, and support from the private sphere. The patients showed knowledge of and involvement in the upcoming transplantation, which indicates that healthcare professionals managed to convey information and support effectively. By identifying the importance of factors such as body and mind and information and support for patients recently accepted for heart or lung transplantation, healthcare professionals are able to make specific improvements in the information and support that they provide. An important implication is to enhance the knowledge regarding transplant patients in other institutions and improve cooperation. Specific support programs to assist patients who have dependent children should be developed. Society needs to become more enlightened about organ donation and transplantation patients.

Women's experience of a myocardial infarction: 5 years later.

BACKGROUND: Myocardial infarction (MI) has long been seen as a male disease despite the fact that it is also a health problem for women. Factors that may influence their recovery, such as co-morbidity and requirements for support, have received less scientific attention. AIM: To explore and describe how women conceived their health and daily life 5 years after an MI. METHOD: An explorative and descriptive approach inspired by phenomenography was chosen as the design. The present study includes 12 women who have been described in earlier short-term studies. FINDINGS: The women described how the MI caused limitations in their lives even 5 years after the MI. They experienced physical restrictions, fatigue and also other health complaints. Furthermore, the older women suffered from various co-morbidities such as diabetes, kidney disease, high blood pressure, and stroke. Some women did not perceive their heart disease to interfere in daily life. Many of the women had thoughts about having a new MI. Furthermore, some women were grateful and described it as having a second opportunity. CONCLUSION: The present study indicates how women in the recovery process 5 years after an MI still need support to continue with lifestyle changes. The women continue to struggle with different kinds of issues, such as financial stress, co-morbidity and side effects of medication. Support from the health care only in the first year after the MI is not enough. The women should benefit from the possibility to visit or consult professionals in primary care with knowledge of CHD.

The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective.

INTRODUCTION/OBJECTIVE: Diagnostic delays in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are related to increased morbidity and mortality. The risk of a delayed, or even a missed, diagnosis is high as the conditions are rare. The aim was to describe patients' and spouses' experiences of the journey from the first symptom to an established diagnosis. METHODS: A secondary analysis of 31 transcripts, based on 2 primary datasets containing interviews with 17 patients and 14 spouses, was carried out and analyzed according to qualitative content analysis. RESULTS: One overarching category was revealed from the content analysis; "The journey from doubt and hope to receive the diagnosis." Five subcategories were identified as: overall experiences; ignoring symptoms; seeking primary care/hospital specialty care; blame and stigma; and finding a pulmonary hypertension specialist clinic. The main finding was that both patients and spouses experienced that waiting for a diagnosis and the deteriorating state of health led to anxiety and frustration. The knowledge about rare diseases among health professionals needs to be improved to enable a timelier diagnosis and initiation of treatment. CONCLUSION: Patients' and spouses' lives were negatively affected by having to search for a correct diagnosis. In order for health care to identify rare diseases earlier, a well-functioning and responsive health care system, in primary care as well as in specialist care, is needed. Symptoms like breathlessness and fatigue are often unspecific but should not be ignored. Keeping the patient and spouse in the loop, and providing information that the search for an answer might take time is essential for health care providers to create trust.

A Prehospital Emergency Psychiatric Unit in an Ambulance Care Service from the Perspective of Prehospital Emergency Nurses: A Qualitative Study.

The prevalence of mental illness is steadily increasing, and ambulance teams frequently attend cases with suspected mental illness. A pilot project, Psychiatric Emergency Response Team (PAP), was carried out in which a prehospital emergency nurse (PEN) was accompanied by a psychiatric specialist nurse in the assessment of individuals with mental illness. The aim of the present study was to evaluate a prehospital emergency psychiatric unit from the perspective of PENs. A qualitative method using content analysis was applied. Seven senior PENs who had worked for 1 year in a prehospital psychiatric ambulance unit were interviewed individually. The analysis resulted in one main theme, "Transition from limited care and insufficient competence to improved and adequate care for psychiatric patients in ambulance care". This emerged from six subcategories: inter-professional development, access to patient records, theambulance vehicle,non-conveyed patients, cooperation with the police and meetings with patients and next of kin. In conclusion, these results suggest that in ambulance care in general, there is a lack of knowledge and skills about mental illnesses and initial care options. The PAP concept opened new avenues for the care of patients with mental illness, which the PENs described very positively as being helpful and valuable.